Our daughter Lucy is 19 and autistic. This is an insight into daily life coping with this cruel and confusing condition, both for her and for us, her family.

Monday, 30 June 2014

A Painful Weekend

Poor Lucy. Not only do we
have the frustration and confusion after the last panel decision, but
she also has the pain of her ankle injury. She was so keen to get to
school this week so that she could join in with the end of year (and for
her, end of
school) celebrations at Marston Hill. I called up on the Monday
asking if she could return to school, and was told that she would have
to be risk-assessed. Fair enough, she needs to be able to walk up and
down stairs etc, in case of evacuation and so on. Well,
she was so keen to be there, since she was supposed to preparing the
"leavers DVD", that she immediately tried to walk faster in her cast.
It was not to be though, it was too difficult.

On Monday
she went back to the hospital to the consultant, and to her relief she
was given a walking boot. She had been studying these boots all Sunday,
on the internet, so that she knew all about it. Lucy can be very
industrious when it is about her
own interests. But that is totally her, and that is totally her
autism. If it makes sense for her to do something she will do it,
otherwise she doesn't get why she should do it. Easily seen as plain
laziness and being inconsiderate of course, and it would
be hard to defend the opposite position. Anyway, so she gets a walking
boot on the Monday,
and is elated about it all. She asks me again (dozens of times) what
the school said and what this risk assessment could be, and proceeds to
practice walking up and
down the stairs. As it turned out, she was not able to get a risk
assessment at the school until the Thursday, since we had some very important business on the Wednesday (more about that in a separate post), and was by then very mobile up and down the stairs.
Quite remarkable these boots. They are like removable casts.

As it was, she was accepted back in school on the Thursday,
and we all breathed a sigh of relief. Two days peace again. It was
getting very difficult having her moping around the house, frustrated
about not being able to join in and constantly asking
about going back. Interesting all the same, that she should want to be
with her "friends" - but of course we know that she cannot make friends
in the same way as others. For her it is just being in their company,
but not interacting necessarily. They will
do the interacting (they are not all the same type of autism and have
different problems to her) and she will play along and try to act like
them. In her own way she does interact, but is so terribly unconfident
and unsure of her self. Still, she likes to
be around these "friends" and that is good for us. Some way she will
have to build her own life and choose people she wants to be with, and
can trust. It will be a hard route. The road to adulthood is fraught
for her. We will have to be there for her for
a long time yet, even if she does get in to Pearson's.

Although it is often very hard dealing with Lucy, and she will be
very hurtful at times ("you're a terrible parent, you don’t care about
me", not to mention how she talks to Amy), my heart constantly melts
when I see her struggling, when I see her confused
and scared about the world. When I hug her I feel a close attachment,
and I am trying to protect her from all the evils confusions of the
world. All those things that mean she is even more at a disadvantage,
all those things that make her feel she is really
isolated and forgotten, all those things that could make her feel bad,
make her hate herself, make her want to give up. When she cried to me
yesterday about how her ankle hurts her so much she cannot sleep, I
weep, since I don't think it is fair that she has
all this pain in her head, and then has to have this extra pain in her
leg. Life is so unfair. I hug her tighter telling her I am proud of
her, but she pushes me away, she can only take so much of my emotion -
this is all about her remember.